Month: July 2014

‘So grateful Olivia’s fever finally broke and Wilson & Rolf made it home safely from Chicago early this morning. Thank you for your prayers. Even though the past couple of weeks have been difficult for me, there have been some fun moments too and I didn’t want them to be forgotten so here’s a little look as some sweet summer fun…

Wilson had fun with Rudy on the trampoline a couple of weeks ago…it’s a good thing I wasn’t aware of how high Wilson was bouncing Rudy or I probably would have put a stop to it and Mr. R would have missed out on some BIG fun!! Look at that smile!!…“Again, Wilson, again!”Big Air!Rudy learning some new dance moves at Vacation Bible School!Fun with Maxo too!Artist in the house! Our friend CeCe who painted this beautiful Rudy’s Heart a couple of years ago visited with her family on their way through town! Summer joy!It’s Fiesta weekend here in Santa Barbara…a favorite annual celebration. Viva La Fiesta!!!While Wilson and Rolf were in Chicago (on business and a college visit), they made a stop at two of my favorites – White Castle and my childhood home! Yay!

We have just a little over 3 weeks left of summer…time enough to cram in a few more highlights! Ha Ha 🙂 Stay tuned…

I went to my friend’s service today…a beautiful celebration of her life. Rolf and Wilson are out of town this week and Max stayed home with Olivia who has been battling a high fever and feeling awful since Thursday so Rudy and I went for our family. I admit I struggled about going earlier today…I didn’t feel great leaving Olivia and I knew it would be hard to navigate the crowd with Rudy in tow but I’m so glad I went…it was beautiful. As expected, the church was filled to its capacity. I wasn’t sure if Rudy would be quiet so I sat in the baby/cry room with him…enclosed with a view of the sanctuary and audio piped in through a speaker. As it turned out, Rudy was amazingly sensitive and sat quietly watching the service intently (especially the video montage of pictures of Kenon). I, on the other hand, sat with tears streaming down my face the entire time (sobbing at times …grateful I was hidden in a soundproof room!)

For a handful of reasons my heart has been heavy the past couple of weeks…so heavy that it has felt like I’m barely keeping my head above water. Even though I manage the day to day routine pretty well in general, it doesn’t take much for my anxiety and fatigue to surface turning into feelings of being overwhelmed. It can be a quick downward spiral that’s hard for me to crawl out of. So, there I was sitting in this little room today, trying to soak in all the beautiful things that were being shared, feeling overwhelmed and sad when Joni Eareckson Tada (who sent in a video tribute to Kenon) referred to “the buoyant hope of heaven”. It was a quick reference in her thoughts on suffering but, boy, did my heavy heart perk up at the thought of the hope of heaven being a buoy on which to hold tight and rest…even if just for a minute…so I did! During the two hour service I cried, embraced my fears, held tight to my hope in heaven and recommitted to the tasks at hand that have worn me down lately. It was cathartic and precious…Kenon would be pleased. 🙂

I’m praying now that Olivia recuperates quickly…we have two special weddings coming up this next week and I’m praying the virus Livy has been battling ends with her and doesn’t spread to the rest of us…we have much to celebrate with dear friends in the days to come and I sure wouldn’t want any of us to miss out.

It’s Vacation Bible School week at our church and that means all hands are on deck in our household as we all have our volunteer assignments! Now that the big kids are older, it’s a real blast to get to partner together in this special ministry to kids in our community…it’s such a great week for our family but it’s also a bit sad for me as it falls, every year, on the anniversary of my dad’s death. Dad died 4 years ago today of brain cancer. Tragically, I learned this morning that a local friend so dear to many of us, a loving wife and dedicated mother of 3 died last night after her 21 month battle with cancer…her fifth occurrence of cancer in the past 27 years. Hers was an amazing journey of faith and love for people…she had a deep desire to know God and share what she knew to be true of God to others. She experienced God in her day to day journey like no one else I’ve known. I rejoice in her home going to Jesus and all that awaited her in heaven but my heart is heavy for her family and I’m going to miss her presence in our community…her comments of encouragement on Rudy’s Beat…her friendship. This is a sad week.

We celebrated America’s 238th Birthday yesterday at the annual Santa Barbara Rescue Mission BBQ & Carnival. The residents of the recovery program, staff and volunteers hosted a parking lot full of homeless guests who enjoyed a delicious bbq (I especially loved the pasta salad!), some fun ol’ fashioned carnival games and a bountiful raffle of helpful items. Rudy had run of the place in his walker and joyfully greeted the guests. Luckily our friend Dale captured a bit of the fun…

Happy DayRudy got tp’d later in the day at the fireworks show by our neighbor Jannele…We avoid the firework crowds and watch from a parking lot across the street! Yeah, we’re kinda lame that way but all had fun nonetheless!

Thanks for praying us through a loaded day yesterday. Given the haste with which this cath was scheduled–and some of the past experiences we’ve had of cath results being a kick to the gut–we were a bit apprehensive leading into things and probably even steeling ourselves for some tough news.

Our anxiety was heightened by the discussions during pre-op. The primary goal was to see if there were any things that could be done to lessen the strain on Rudy’s enlarged heart. Signs pointed to the coarctation in his aorta (fancy doctor-speak for a tight bend which restricted flow–like a stubborn kink in a gardenhose). The team has previously tried to correct this by inflating with a ballon, but the bend acted like a crease and it popped back. The way to fix it would be to insert a metal stent, which is common in adult patients, but Dr. Dan couldn’t think of a patient as young as Rudy in which he had ever done it. The main problem is “getting the equipment to the jobsite”. The large stent and catheter they would need to do the job would need to be threaded up the femoral artery from his leg and there was concern it just wouldn’t fit. Additionally (and admittedly a bit disheartening) is the fact that the left femoral artery is Rudy’s last un-occluded path to his heart. Even the most skillful intervention creates scarring and an artery can only be used a limited number of times before it becomes impassable, leaving more complicated surgical cut-ins as the only option. So the team needed to weigh whether any intervention was worth that cost, but they wouldn’t really know for sure until they got in and assessed things.

Needless to say our heads were spinning more than usual as we headed downstairs–but at least it took away our appetites and kept us from stress eating our way through the waiting. Good company and a lot of drop-bys from docs and nurses helped to pass the time. We got a progress call from the lab nurse around 3 hours in that they had stented the Sano shunt (which had narrowed significantly) and were finishing up–no action on the aorta. Not bad news, but we kind of prepared ourselves for a “there was really nothing much we could do” conference.

Just a few minutes later we got paged again and Dr. Dan was on the phone rattling through the positives: heart function looks better than everyone feared (perhaps the reason we suspect they rushed us in), they were able to open up the Sano to its original size, and now they had just finished a consult with Rudy’s surgeon and did feel that they should attempt to stent the aorta.

The significance of the moment only hits me in hindsight, but almost unnoticeably things shifted into the quiet intensity that one can suddenly find themselves in in the cardiac world. Just as Dan told me that Brian Reemtsen (surgeon) was coming coming out to speak to us, Brian stepped around the corner. We had a brief three-way exchange with Dan in my ear and Brian in front of me to make sure I understood what was happening and that they were in agreement. Dan finished with, “we will stop at any point if we feel it isn’t safe, but do we have your permission to proceed?” Of course, I agreed but it was only later that it struck me that this was not a routine procedure. Even with the global consents we had signed in pre-op, there was something about what they were attempting that they felt like they needed specific consent for.

Dr. Brian spent time with Trish and I expressing encouragement over Rudy’s condition and that, given the strength of the heart muscle, it was very worthwhile to attempt a step like this to reduce the strain. While any future surgical course is still unclear, successfully addressing the coarctation would have to happen first. Brian certainly wasn’t promising anything specific, but there was a note of wonder that we might be talking about that someday.

We had a bit more to wait before Dr. Dan showed up to give his report and walk through the imagery. He was very upbeat and told us right away that the aortic stent could not have turned out better. The arc had narrowed to 9mm and they were able to insert and expand a stent to 16mm–the size of an adult aorta–which means there is no pressure gradient across it and the blood flows freely!

As the nurse told us over the phone they were also able to fully rehab the Sano shunt to its original 5mm diameter. It had shrunk down to 2.2mm at it’s smallest point, but they used multiple stents and balloons to get it back to its original diameter. As this is supposed to be the primary means Rudy’s heart has to oxygenate his blood, it’s very good to have it free and clear (and gives us chills to think how tiny it had become). Dr. Brian also commented on how amazing that little shunt has performed–he hasn’t seen one last so long and serve a patient as well as Rudy’s has. That could raise concern that we are well past borrowed time, but Dan said he’s now given the Sano and the aorta “full metal jackets” by lining them with stents which will keep them stable, open and clear for a long time.

Dr. Dan was very pleased, but also wanted to get back to Rudy as he was very concerned about the femoral artery. He said they would watch that very carefully overnight as a bleed there would be a major issue. As you can already tell, the time in recovery went really smoothly and Rudy was peaceful and content to lie still like he was supposed to for the rest of the day and slept through the night. Among the more significant developments was that his 02 sats were consistently in the high 80s (compared to the low to mid 70s where they’ve been of late. Since this was his first post-trache cath, it was also the first time he was intubated, so he had a scratchy throat and barely spoke above a whisper–until the moment he saw his big sibs at home had him squealing with his trademark joy.

We’ve learned to navigate this journey and all its big uncertainties by looking for reasons to celebrate and embracing them. That’s what this day meant for us. The big questions didn’t get answered and the major issues didn’t get resolved–but who knows if and when they ever will. For now, we’ll celebrate Rudy’s armor-plated arteries and the positive step they are.

Family FaceTime makes hospital stays more fun–but nothing’s better than being together in person again!